Posts Tagged ‘cancer’

My father died 11 days ago. That is such a weird sentence to write. I always knew that I would lose him and it likely wouldn’t be in his 80’s or 90’s but never thought it would be at only 67. My father spent the last decade and a half of his life battling various health issues some due to genetics, some due to his weight, and some just to the luck of the draw.

Almost a year ago we found out that he had liver cancer and after much testing that in his case it was terminal…there was a lot of time spent on what does this mean. Will he die tomorrow; in years, weeks, months…what? After conversations we resigned ourselves to the idea that he would most likely be gone by Thanksgiving maybe Christmas; he would not see 2017. He did he saw 14 days of it.

Over the nearly a year that he battled cancer the greatest sign of him being sick for many many months was that he lost weight and strength. In the last months of his life his brain went from being a slightly leaky pot to a severely leaky sieve. He lost track of time, forgot how to do many of the normal things in life, he forgot much. He never forgot his family and he never forgot that we loved him and he loved us.

The last time I saw my Dad he could not carry on a conversation but he knew who I was and responded to my ‘I love you Papa’ with ‘oh, love you to kiddo, bunches’ in a quiet voice.

Many years ago on the night before my Dad was ordained to the transitional deaconate my sister and I gave him a father’s day/ordination present that was a small white beanie baby bear. The bear was made as an honorific to the late John Paul II. Its tag read:

“Teacher, Writer, Father, Friend

Your Love for us will never end

Throughout your life a light did shine

On acts of kindness to all mankind”

To us it was the perfect gift for our father who had always been those things in our life. As I look back on his life and listen to people who knew him talk I realize how much those words apply to his relationship with others as well. He never truly knew how beloved he was or how highly many thought of him.

My sister and I often talked about how our Dad had changed when he went to seminary. My dad was ALWAYS an amazing father and a good person but he was a little (okay a lot) more rough around the edges when we were growing up. You could see more of the man who spent six years in the Navy living on a ship with a bunch of rowdy sailors, causing trouble and getting away with it because he was GOOD at what he did, at least as he always told it. 🙂

Growing up my Dad would always go to bat for my sister and I with our teachers. God forbid a teacher did something he found unjust and sent a note home for him to sign. I loved it! I remember once a teacher gave the whole class detention because a handful were being disrespectful and rude to a sub, her reasoning being that we should have made them stop. When she handed the notes out telling us to give them to our moms to sign (mom traveled and was away) I walked up and asked if I could give it to me Dad. (Yes, I was and am a smartass) She said yes and I remember grinning and she looked at me questioningly and I remember basically saying that this should be fun, and that he won’t like this. When I gave him the form he signed it, not on the designated line but after a paragraph explaining that I wouldn’t be staying and what he thought of her teaching methods.

My dad adored my sister and I and we were both pretty good at getting what we wanted from him, he hated to say ‘No’ to us when we were little and he hated when we were upset. If we wanted something at the store generally a simple “look, Daddy, that’s neat” or a “Can I have this Daaaaddy, Please” got us what we wanted with mom shaking her head in the background.

I remember styling his hair with our clips and hair ties; he would just sit there and let us, a small smile on his face. I remember asking him once if he ever wished my sister and I had been boys and him telling me he wouldn’t trade us for the world.

I remember being goofy with him, I remember the first time I made him laugh with a joke I made up on the spot, I was so proud of myself as I shouted “I made a funny” which made him laugh even harder.

I remember him making fun of the people getting out of their cars to watch the mudslide as we sat on the highway stuck. The running commentary, the voices as he pretended to be them had my sister and I rolling in the backseat and my wonder wondering about all of our sanity. She often seemed to be wondering about his sanity in the sillier moments.

I remember when my Dad would ground me it never lasted for more than a few hours, at most a day and that was rare. A simple “I’m sorry Daddy” with a smile and a hug rectified everything…unless of course you were lying than you were in more trouble.

My Dad taught me to play chess with the pieces in made and the board my Grandpa Don made as a wedding gift for him. I loved that time with him. He NEVER let me win and therefore to this day I’ve never won a game of chess against him but oh how I loved that time with him.

As I grew older I loved to just sit and talk with him, politics, history, and religion were some of the best things to debate, discuss, and learn about with him. I remember in high school we were talking about something that I had recently learned in history class and was arguing with him, RUDELY, and he got frustrated that I wouldn’t just Shut-up and listen and threw the couches decorative pillow at my head. Mom wasn’t too happy when it grazed me and hit the lamp…let’s be clear she was upset about the lamp, me I was being a Shit and deserved it. I often teased him in my adult years about the time he threw a pillow at my head.

I learned a lot just talking to my Dad, he knew a little about a lot and as well as a lot about a lot of various things. He had a thirst for knowledge and was always reading and seeking out knowledge. I learned to not just go with what everyone else says from him but to formulate my own opinion. I’ve learned about a lot of odd things and read many a book that I wouldn’t usually read because I didn’t want to just jump on the hate bandwagon but formulate my own opinion and ideas as he taught me.

This idea of knowing what you think especially applied to faith. Dad and I would spend hours discussing religion and faith, he often played devil’s advocate challenging me to not just say ‘yup I believe _____’ because others did but to understand and know. We did not always agree and I know he, generally, respected the fact that I didn’t just spout back his beliefs any more than I would someone else’s.

I miss him, I would give anything for one more conversations, one more Chess game, one more hug, and especially one more Je t’aime! Je t’aime is I Love you in French. Growing up Dad would speak to us in French sometimes, just to be silly mostly but it made me want to learn French so I took a couple years in high school, my French is at about a 2/3 year olds level I would guess. When I learned that Papa was basically the French equivalent of Daddy he became Papa. When I was an adult and my folks and I were in a shared household for a number of years due to his health issues a tradition emerged. Every night I would knock on his door and say “Je t’aime Papa. Bonne nuit.” on my way to bed. He responded with “Bonne nuit, je t’aime aussi … beaucoup” or some variation thereof.

I could go on and on talking about the amazing man that I called Dad, Daddy, & Papa. He had his flaws like all people but he was also a good man and a great father. I consider myself blessed to have been raised by him. To have learned from him and been shaped by him into the person I am today. As a child he was my hero and in many ways my closest allie in this crazy world, as I grew older I saw more of his tarnish and flaws but still was often awed by him.

Just over two years ago I wrote an entry entitled ‘You Don’t Know’ about the idea that you don’t know what it like to walk through someone elses illness. I’d like to revisit this idea from an emotional stand point instead of a physical one and from the point of someone who is losing someone they love dearly.

“I would give anything for one more visit with my mom”

“Embrace the time you have”

“Spend all the time you can so you have no regrets”

‘You’re so lucky, I would give anything to have known it was coming, to have had more time”

This is what I hear and more when I ‘complain’ about watching my father fade away as he suffers and dies slowly. When I struggle to figure out how to deal with the emotions of losing one of the most important people in my life. I nod my head and I say thanks but I wanna scream “YOU DON’T KNOW!”. Early in this process when my dad was still whole the platitudes of embracing him, making memories, and regret for lost loves I understood at this point they hurt.

Here is what a visit with my father looks like:

I visited yesterday, I walked in to his room in the nursing home, not much different than a hospital room, and he was sitting up in his bed. His breakfast untouched in front of him, his hands shaking uncontrollably, glasses off, eyes barely open. I said ‘Hi Papa’ and he looked at me and was happy to see me, he knew who I was (Thank God!). He said ‘Hi’ and then muttered incoherently for a bit. I could see that he was struggling to see what was on his tray so I asked where his glasses where, he continued to mutter, I found them and asked if he wanted them. He said yes and I helped him put them on as this simple task that he’s done most of his life is a challenge for him now. I took the lid off it, his fruit, and hot cereal telling him what each was and asking what he wanted. He muttered at me for a bit more and I figured out he was asking about the juice on his tray. At this point my mom came in and I asked her to find him a straw as I held the cup to his lips because he couldn’t, his hands were shaking too much and too hard. When I pulled the cup away he said “That’s good!!!”. Mom came in with the straw and with help he finished the juice. He proceeded to mumble and mutter at my Mom about her looking ‘different’ and ‘less dark’, we have no idea. He then spoke a bunch of garble gook that had the word “back” in it. Based on his movements I could tell his back hurt and between gestures and deductive reasoning we figured he wanted the bed down. Throughout the half hour I was there he faded in and out of consciousness many times. I had to leave the room once as I refuse to cry in front of him. Very little of what he says make sense, and he doesn’t in general understand what he’s being told. When I left I kissed him on the head and told him I loved him he said he loved me to. The only positives, truly, of this visit are that he knew who I was and understandable said I love you.

This may not seem that bad or whatever but I left this visit and for the first time in this process completely fell apart. I’ve strived to control and push down the feelings of this process and seeing my Papa like that made it impossible.

When people tell me what they would give for one more visit with their lost love one in response to my sorrow at my father’s decline I want to ask if they would still feel this way if this was what a visit looked like. If after a visit you sob for the person you love. The reality is I would give anything for one more conversation with my dad, my Dad – My Papa, not what’s left.

Just because you’ve lost someone and miss them doesn’t mean you know what someone who is going through that experience is feeling. Your relationships, your way of dealing, your everything is different. You are a different person and therefore your way of processing is different. Even my sister and I, both losing the same person in the same way, are going to experience this loss differently because we are different.

I’m not saying don’t help or offer your thoughts to people going through this process, some of the greatest help through this has come from friends who’ve been through it, I’m saying think before you speak. Your desire for your whole completely missing parent doesn’t mean that my sorrow for my declining and slowly vanishing and suffering parent is invalid. I can’t embrace my time with him anymore because time with him means sorrow and pain. It means watching him search for words, it means watching the odd shape of his mouth, it means trying to understand the gobbly gook that is speech, it means seeing the pain on his face, and it means watching him sleep and fade in and out of consciousness.

As many of the people in my life know my Dad has terminal liver cancer. He’s going to die, and it’s going to happen sooner rather than later. I am often asked how he is. I find this hard to answer because I don’t want to give false information or false hope. He’s doing pretty well. His doctors are good and are managing his palliative care well. He is handling it with Grace. Being a retired priest and Christian he has no doubt as to what happens next and in many ways seems to see it as the next great adventure. All outward signs say that my Mom is handling it well as well. There’s this great acceptance that comes from both of them when we talk about it. I am as always amazed by my parents and their faith and trust that “All Shall be Well”, whatever happens.

On the rare occasion that I am asked how I am doing I don’t know how to answer. I’m doing lousy, and I often don’t know how to put that in words as well as feeling like it’s not fair for me to say that. I am angry at God for putting my father through this. My dad is not perfect but he is a good man. He is a man of faith and a man who’s always worked to share his faith and God’s unending grace with others…and yet once again his health fails him. I am terrified that I am going to break down and not be able to stop. I am sad. I am frustrated with myself that I can’t be faithful and trusting in this process. I am tired, no matter how much or how little sleep I get I am just tired. My brain doesn’t want to work half the time. I keep waiting for the next shoe to drop, the next stage in this process.

People tell me how lucky I am to have this time, to know it is coming and where that may be true there are moments when it feels like a curse. I’ve always known that someday I was going to lose my Daddy, I’ve always know that I was going to lose my Papa sooner rather than later I’m just not ready for it to be this soon. I don’t know how to process this, I don’t know what to do, how to help make it ok for him, for my mom, for my sister, for all the people who love him. I don’t know how to deal with the knowledge that there are things that aren’t going to happen. My father’s never going to walk me down the aisle (when and if I get married), he will never see my kid’s (when and if I have them), and they will never know the amazing man who can make a mud flow funny, who taught me to play chess, or the fine art of haggling at Monopoly. The man who taught me the joy of a well-timed bad joke. The man who encouraged me in all (ok most) that I did, the man who thought me to ask questions, to understand my faith, and to fight for what I believed in.

I will miss being goofy and strange with, making my mom worry about our sanity. I will miss debating with him, learning from him, and just talking theology, politics, and so much more with him. I am who I am in many ways because of him, I will never regret being a Daddy’s girl!

Sitting here drinking coffee looking at Facebook and waiting for it to be time to get the girls up. The other day I saw a post about a girl who has a terminal brain tumor and has picked her desired day to die within the laws of Oregon. Today I see another post from another woman, a mother of four, who is also ill, telling her why she shouldn’t want to die. All I could think is you don’t know.

So often you hear people who think ‘well I have such and such to so I must know how and what you feel and your doing it wrong’. Last time I checked we as human beings don’t have the ability to be in someone else’s body and know how the world looks or feels for them.

My best way of explaining this is this…just because I know what it means to live with my chronic illness doesn’t mean I know what it means for someone else. Just because I know what it means to live with my Meniere’s doesn’t mean I know what it means for my friend with the same Illness.

Just because you too suffer, whether with the same disease or not doesn’t mean you know what it’s like for someone else. We cannot experience life through someone else’s body only our own.

I wish more people remembered that and respected that. Don’t assume you know all about someone because you know illness.

On that note don’t assume you know all about a person based on the snapshot you may get of their life.